Families run out of hope, money after cancer treatments

Liz Szabo, USA TODAY
8:12 a.m. MST January 15, 2014

Doctor Stanislaw Burzynski makes his way to the federal courthouse for jury selection in his 1997 criminal trial, as supporters demonstrate outside the courthouse Jan. 6, 1997, in Houston. Burzynski pleaded innocent to a 75-count federal indictment that charged him with mail fraud and violating Food and Drug Administration regulations in the use of antineoplastons, experimental substances he created to treat cancer. One of his criminal trials ended in a hung jury. In the other, he was acquitted. David J. Phillip, AP

Stanislaw Burzynski, 70, opened his Houston clinic in 1977. He said he has treated more than 8,000 patients with experimental substances that he calls antineoplastons, and has treated around 15,000 patients during his career. The Food and Drug Administration has allowed him to test antineoplastons legally through a clinical trial. Michael Stravato for USA TODAY

Politicians rallied around doctor Stanislaw Burzynski in the 1990s, when he was prosecuted for mail fraud and other felonies. Georgia state Sen. Ed Gochenour spoke during a rally May 19, 1997, outside the federal courthouse in Houston. Gochenour was a patient of the controversial doctor. He died from a pulmonary embolism in 1999. Pat Sullivan, AP

Walter Murach comforts his wife, Barbara, as he carries her medicine distributor during a demonstration to show support for doctor Stanislaw Burzynski on Jan. 2, 1997, outside the federal courthouse in Houston. She had been diagnosed with ovarian cancer and was a patient of Burzynski's. Burzynski pleaded innocent to a 75-count federal indictment that charged him with mail fraud and violating Food and Drug Administration regulations in the use of his experimental drugs, which he calls antineoplastons. The indictments resulted in two criminal trials. In 1997, one ended in a hung jury; the other, an acquittal. David J. Phillip, AP

Niasia and Jose Cotto hold a photo of their 6-year-old son, Josia. They took Josia to see doctor Stanislaw Burzynski last year, hoping that he would cure their son's inoperable brain tumor. Josia died two months after beginning treatment in June 2012. Josia's younger brother, 1-year-old Noah, is seen here with his parents at their home in Linden, N.J. Todd Plitt, USA TODAY

Abra Hall, 27, still has purple stretch marks on her skin, caused by Cushing syndrome, which she developed after taking high doses of steroids that she received at the Burzynski Research Institute, where she was treated in 2012 for a brain tumor. Cushing syndrome also caused her to gain a lot weight. Hall has an advanced, inoperable brain tumor, but sought treatment from Burzynski because her family urged her to seek alternatives to radiation and chemotherapy. Hall said she abandoned the Burzynski treatment after developing serious side effects and has since received conventional cancer care -- including radiation and chemotherapy. Ethan E. Rocke for USA TODAY

Abra Hall developed life-threatening complications after returning home from the Burzynski Research Institute, where she and her caregivers continued to administer antineoplastons themselves through a catheter in her chest. Hall was hospitalized for a dangerous blood infection called sepsis, which developed after the catheter became infected. She later developed pneumonia. She has recovered from those infections and is now getting conventional treatment, including oral chemotherapy medications. Ethan E. Rocke for USA TODAY

Abra Hall, of Chehalis, Wash., says her chemotherapy cancer treatment makes her feel fatigued and sensitive to light. Hall went to the Burzynski Research Institute in Houston for experimental drug treatments until severe complications forced her to stop taking Burzynski's experimental therapies, which included substances that he synthesized, called antineoplastons, as well as other drugs. Ethan E. Rocke for USA TODAY

Abra Hall's mother, Stacey Huntington, borrowed $40,000 from friends and family to pay for her medical care, as well as travel and hotel expenses related to staying in Houston while being treated at the Burzynski Research Institute. Like many other Burzynski patients, she created a website to solicit donations. Other patients' families hold fundraisers and turn to the media for help, telling their stories in newspapers and on local TV. Screen grab

Many of Abra Hall's friends offered to pitch in to help pay for her cancer treatment. She's one of many Burzynski patients who rely on community help. In many cases, schools and local businesses hold charity events to help patients raise money.
"When you get a diagnosis like cancer, you are pretty vulnerable," says Stacey Huntington, Abra Hall's mother. "I think they take advantage of that." Screen grab

Stacey Huntington, left, was desperate with worry when she took her daughter, Abra Hall, to see Stanislaw Burzynski. She now says he preyed on her vulnerability. "In the initial meeting with Burzynski, he himself claimed a minimum 40% cure rate," says Huntington of Chehalis, Wash. "He is selling hope to dying people." Ethan E. Rocke for USA TODAY

Wayne Merritt, a farmer from Armuchee, Ga., went to see Burzynski in 2009 after being diagnosed with pancreatic cancer. He had hoped to receive antineoplastons, an unapproved drug that Burzynski legally prescribes through an FDA-approved clinical trial. Merritt didn't qualify for the trial, and was disappointed to realize that the drugs he had been prescribed were conventional chemotherapy. Merritt abandoned the treatments after only a few weeks after learning that they would cost $30,000 a month. Michael A. Schwarz for USA TODAY

Wayne Merritt and his wife, Lisa, say they got a "high-pressure sales pitch" from the Burzynski Clinic. "We felt like he was out to get every penny he could get from us in a short amount of time," said Lisa Merritt, from Armuchee, Ga. The Merritts, who tell their story at burzynskiscam.com, said one of Burzynski's employees, Marc Stephens, called them in 2011 to say that they could face legal action if they did not take down the site. The couple refused, said Lisa Merritt, also a cancer survivor.
"I said, 'I have had breast cancer and faced death. My husband was diagnosed with pancreatic cancer and he's facing death,' " Lisa Merritt told Burzynski's representative at the time. "What do you think you can threaten us with that is going to scare me after this?'" Michael A. Schwarz USA TODAY

Jim Treadwell walks with his wife, Victoria, near their home in Coronado, Calif. He was diagnosed with an aggressive brain tumor in 2004 and underwent surgery, chemotherapy and radiation. At the conclusion of treatment, his doctors told him there was nothing more they could do for him, Treadwell said. He decided to see Burzynski and enrolled in an FDA-approved clinical trial of antineoplastons, given along with steroids and other medications. Treadwell developed serious side effects after beginning therapy, including congestive heart failure, liver problems and swelling. He stopped taking antineoplastons after six months, but his cancer has not returned. Victoria Treadwell wrote a book detailing their experiences. Although many oncologists are skeptical of Burzynski’s success stories, Treadwell, a retired lieutenant colonel in the Marines, is convinced the antineoplastons cured his brain tumor. “I really don’t care what people think," he says. "We know what we know." Robert Hanashiro, USA TODAY

An employee walks past a sign whose letters were rearranged by patients of doctor Stanislaw Burzynski years ago to read: "Hope Exists" at his clinic. Stanislaw Burzynski has treated patients with drugs that he calls antineoplastons since the 1970s. Although the drugs are experimental, the FDA allowed Burzynski to dispense them legally, through a clinical trial, in 1996. That trial is now on hold, and no new patients may received the drugs, according to the FDA. Burzynski also is scheduled to appear before the Texas Medical Board in January. Michael Stravato for USA TODAY

Over the past 36 years, thousands of families have flocked to Houston doctor Stanislaw Burzynski in the hope that he will cure their child or loved one of cancer.

Burzynski has no hospital privileges and works out of a clinic. Patients and their families stay in hotels while visiting him.

If children deteriorate, they often end up in the closest emergency room, said physician Jeanine Graf, director of the pediatric intensive care unit at Texas Children's Hospital in Houston, who says she has treated at least a dozen of Burzynski's patients.

Typically, Graf sees Burzynski's patients after they have become unresponsive, unable to open their eyes or breathe on their own. Graf says she's never seen Burzynski attending to them.

And describing her personal experience with Burzynski's patients, Graf says, "I've never seen one survive long-term."

The unlucky ones end up broke, spending everything on medicine, airfare, hotel rooms and meals while in Houston, Graf says.

In the end, some of these families can't even afford to take their children home to die, she says.

When that happens, Graf asks her hospital's charity organization for money, and it never refuses — even when sending a child home requires the equivalent of a flying intensive care unit. A single flight on one of these specialized planes can cost $20,000.

A look at a doctor's cancer claims.(Photo: Jerry Mosemak, USA TODAY)

Burzynski's attorney, Richard Jaffe, notes that all cancer care is expensive. Because insurance companies often refuse to pay for all or part of Burzynski's treatments, his clinic ends up writing off a lot of unpaid bills. "I think the clinic's policies are a lot more charitable than the big institutions," Jaffe says.

While Burzynski often meets patients on their first trip to the clinic, Jaffe said he is "not the treating physician of the clinic's patients." The doctors on Burzynski's staff have admitting privileges at local hospitals and "attend to patients as needed," Jaffe said.

After caring for some of the Burzynski patients, Graf said she wouldn't recommend his clinic to anyone. Although Burzynski's patients can't always be cured, she says, they do have choices.

"The most valuable commodity that a person with a terminal illness has is time," Graf says. "You want to make sure that when you're investing time in any therapy, that you are going to get a return on your very valuable last investment."